Updates

[SJa2020]

Hi all just an update on me.

Background: Joined this in July’20 as had muffled hearing , no hearing, pressure in head & pain behind ears all on left. Walking like a drunk etc. And left leg numb. I also have MS but usually (for last 21 yrs mild symptoms.)

Trip to A&E in July & they said AN & gave me 2wks steroid. Consultant said couldn’t be AN without scan, sent me off saying if it continues for 6m to return then he’d put me in queue for mri! Tried pvt (mri on 23/11/20).

Unfortunately last week suddenly right leg went numb. To A&E be got steroids again 1 wk. Also have vvbad water retention (oedema) - about + 14 cm around waist & hips at end of day! Don’t know if it’s all part & parcel of this, my MS or something different! And of course with Covid so difficult to get Drs to look at anything.

The journey into unknowns continues.

Do any of you get numb other parts - legs/ hands and/or water retention. Just trying to see if it’s part of AN or just my own stuff!

Take care all.

[flappers]

Sorry you're having such a difficult time. Amazing the difference in terms of being able to get an MRI. I too had numbness, blocked feeling and hearing loss and terrible screaming tinnitus in one ear but no issues with numb leg hands etc. I was given two MRI scans within a 10 day period of being seen by the GP. I do hope you can get the help needed asap as the not knowing and waiting game is stressful. Absolutely update your gp with every symtom change. Good luck. I hope you are finding a way to stay as safe and sane as possible.

[SJa2020 in reply to flappers]

Thanks! Wow 2 MRI’s in 10days ! Great GP & med system where you are! As they say a bit of postcode lottery around here now (if you are in UK).

Just trying to just go on. Have had a bout of bad news this year - my nephew (32) passed away suddenly in June. Long story short have had a list of bad stuff & this new numbness on right is just on top - but just going on as one has to. And hoping for the best! Thanks! TC all the best

[SJa2020 in reply to flappers]

How was your appt yesterday? Hope all went to plan? TC

[flappers in reply to SJa2020]

Hi. Such a devastating loss for you and your family. I have no doubt that trauma causes untold extra strain on our bodies. I'm so sorry for your loss.

I am in Kent, UK. And cannot believe how quickly I've had apts. I have one with the consultant on Sunday at 5.30, all NHS.

My two apts yesterday we with audiology. Hearing tests showed hearing loss in mid and top range so will be fitted with hearing aid and tinnitus masker on 4.12. they said they were not seeing people to fit them but sending them in post, but as I needed the tinnitus masker as that's what's causing most distress, that has to be in person. I'm grateful for their help. Really really hope you can get some relief from both the physical and emotional pain you're in. Hope there is some joy in your life. I'm going to a granny next year so that's filling me fill of gladness!

[SJa2020 in reply to flappers]

Wow a granny! Congrats!

Yes I’m sure it’s the strain we are on that impacts. Had v. stressful divorce leaving with 1 child & am sure that gave me the MS. And supporting sis & parents (in diff countries) & overworking caused me to get it. As I came out thought wanna be a better me & joined health thing - losing weight too. Then continuing old plans got in to buy a house & wham right leg goes numb! But taking it in stride (mind the pun) . Thank God for Covid & WFH as can work after 3m on sick leave! Had to return as prev was allowed 6m now 3m. So keeping 1 in hand. Getting 1/2 pay only for 1 month. ....

So yes the fact I’m alive, able to be with my children, they are well. I have a job, am hopefully gonna get a house ... yes looking at the simple basics! When faced with big things one just needs to do that right? Life is a blessing we must live it. I was hiding behind life’s problems & not living! Well hopefully will be ok.

Sorry did a lot of therapeutic spill over here. Guess cause you asked. Sorry! Take care & all the best . I’m coming to kent for the mri. Used to pay a little bit from a prev work & it’s via that! When nhs lines are longer can go there! So glad I did it & continued after as well.

TC & luv for all here.

[flappers in reply to SJa2020]

So glad you can get the scan. I lost my private health cover when I was made redundant in July, two months before diagnosed... But actually as you know, one been so lucky with getting the apts needed. Let me know how you get on with the scan and results. Trying to focus on the blessings and positive stuff is definitely the best way forward, but it's also okay to have a place to also share the really tricky bits too. One day at a time, 🤞🏻💪🏽

[SJa2020 in reply to flappers]

Thank you ! Yes at times I find close people are overwhelmed as they care about you . But one needs to vent & it’s easy on these sites guess cause we are all facing similar thoughts & emotions.

All the best for you. Are you on wait & watch &/or are they just going to give the things to reduce tinnitus etc?

I had a few months when it went but can feel the humming & pressure start up again. Hopefully mri will reveal what’s hiding beneath or not - which then may mean it’s the MS. Oh well! In God we trust He will find the way forward. TC

Doing a bit of declutter - therapeutic! TC hugs for all

[flappers in reply to SJa2020]

You are dealing with a double whammy. Whatever the cause I do hope it's the inner most treatable. But good for you taking positive action where you can....Oh I do need to declutter! To answer your question, I'm on wait and watch until next scan in March. Initial scan in September showed 15mm by10mm so I guess if it doesn't grow much and I don't get any more symptoms then carry on with w and w... Keeping everything crossed for that as whilst the squealing tinnitus is driving me a bit mad, it seems it's the least of the symtoms and better than the possible outcomes from surgery. Interesting that yours came and went?

This is a good place to share experiences, especially if you're used to being the nurturer and coper, so hard to tell friends and family we could a bit freaked out about what may be coming our way. I just say I'm fine!

[SJa2020 in reply to flappers]

Hi there! Hope you are well. Just realised your next scan is coming up - in March right? (What Date?) all the best . Touch wood will not have grown & you will be ok - although yes at times one thinks ... but it’s there. No worries a step at a time.

I’m ok possibly getting a long term med once my steroids go down. Monthly infusions at a central London hosp (ie 1.5hrs taxi journey one way). Med can give immediate fatal allergic reactions &/or also cause brain infection that makes ms worse & disability worse. But let’s see.

The choices are just relative right?

All the v v best for you. WE CAN DO IT!

[flappers in reply to SJa2020]

Oh bless you for remembering! It’s actually on Saturday, so I’ll hopefully know fairly soon if it’s grown. The team at kings reviewed the first scan and the neuro oncologist indicated as the tumor is already pressing on my brain stem radiotherapy may not be an option as will swell it before it does it’s ‘stop it growing’ thing! So... if that remains the case, the only option will s surgery BUT if it’s not grown then I’ll be in watch and wait for another year I guess... that’s my hope! I’ve got a first grand baby arriving in May to enjoy! I do so hope you’ll soon get a better treatment regime and especially one that doesn’t give fatal reactions😱😱😱😱 Keep to that amazing spirit and know that we absolutely can handle whatever is thrown at us. 🙏🏼💕💋

[SJa2020 in reply to flappers]

Yup we will go on. In our religion we have a saying “God does not burden a soul more than it can carry”! Yes our family has now started to say God please no more!

TC & all the best for Sat. Will check in later!